The doctors here say that boring is good. Alas, today was not quite as boring as yesterday. It started with a low-grade fever at dawn (38.4C/101.4F), which resulted in my taking Tylenol as well as being put on an IV drip with an even stronger anti-biotic than I have already been getting.

When the morning doctor rounds took place, I was informed that my platelets were at a very low 9,000 per cubic millimeter (normal is 140,000 and higher), exposing me to potential problems with respect to bleeding. Considering that I had bloody sinuses during the night, this was a bit scary. I was also told that there was still no measurable sign of any neutrophils in my blood. Maybe tomorrow?

I was given five units of platelets, and stayed on my IV most the of the morning. Getting another CBC (complete blood culture) this afternoon showed that the platelet infusion has bumped me up to 17,000. Much better but not great. So I’m getting another five units right now as I write this.

The fever has been gone since this morning fortunately, and I had a pretty good afternoon. I even had Linda take me out for a slow 15-minute walk around the clinic. Pretty tiring but it felt good to be moving. The rest of the afternoon was a nap-fest all around. I am coming to appreciate naps more than ever before. Naps are good!

The dry mouth is still a plague, although I have found that I can manage chicken and beef broths as my main forms of sustenance – they are among the least difficult foods to process as they minimize stringy mucous build-up, and cause the least mouth pain. I even managed to get some minced, steamed (over 165F because of my neutropenia) roast beef into me last night via the beef broth, which made my body happy (protein!). Warm herbal teas – blueberry and raspberry – are good too. And Hall’s Sugar Free Citrus Drops are helping a bit too.

I’m also coming to grips with the stubble on my head and face. The lightly-adhesive lint roller is coming in handy, but I still keep having tiny stubble hairs come off in my hands, shirt, pillow, etc. I will be glad when all the stubble is gone, so I can have a real Mr. Clean look, shiny head and all. I like that comparison (thanks Sam!) better than the Telly Savalas or Yul Brunner look.

I’m hoping for no fever overnight and the start of measurable neutrophils in the morning, as that would indicate my body is finally starting to make progress after the necessary destruction to my immune system caused by the chemotherapy and radiation.

Linda and the kids have been wonderful to have around to give me comfort, support, germ free hugs, and ruffles. I have no idea how someone without such a support network would handle this process. So, again, thank you Linda, Krystyana, and Bas. I love you all!

 

Day 7 – Restful day   October 13th, 2011

From Linda…

Jake said he felt less agitated today compared to yesterday. He got a good round of naps and no extra IVs today. His doctors congratulated him on a good boring recovery day and having a good attitude. :-)

Today Krystyana and I visited the National Gallery of Art to see the special exhibit of Italian Drawings which Jake had already seen about a month ago. We hit the supermarket on the return to stock up on microwave Campbell’s Chicken Noodle soup for Jake, plus food to cook for the rest of us at the Lodge.

I took Jake for a pre-dinner walk – three laps around unit. After dinner of beef broth with extra roast beef bits added to it, another three laps around the unit. I suggested a marathon next week – 26 laps!

Tomorrow is another boring day, highlighted by laundry for all.

 

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From Linda…

Today was more of the same but a little less of this and that. They stopped two medications and gave Jake just one batch of platelets, so Jake’s day was more untethered than tethered.

The helpful hint of using a sticky tape roller-style lint remover to get the hair stubble that is still falling out worked wonders – Thanks Mare! And did I mention it is fun too in a silly kind of way. Almost as much fun and making a Mohawk – watch out Bas.

The doctors stopped by in their usual group to see how Jake was doing. They were happy to hear “nothing new, nothing exciting”. At this stage of the game, boring is good. We took Jake for a stroll in the hospital. We played Yahtzee and Crowns. We rubbed Jake’s back and snuggled close to encourage him to eat his chicken noodle soup.

The next change will be the reappearance of neutrophils in Jake’s blood sometime in the next several days as his immune system starts to come back on-line.

 

Day 5 – Off With the Hair   October 11th, 2011

I kept hoping I would be among the 1% of chemotherapy patients who wouldn’t suffer hair loss, but this morning as I scratched my head upon waking up, I managed to pull a clump of hair out. So put me on the 99% side of the hair loss column.

Pulling hair out of my head led me to figure out what other hair will fall out too, and some careful exploration suggests I will retain my arm and leg hair, I may keep my eyebrows and some of my already meager chest hair, but everything else is going.

My nurse this morning mentioned that a recent female chemo patient wore a shirt that said “Chemotherapy Gave Me the Best Brazilian” (I hope I don’t have to explain that further, but if I do, it refers to wax, hair removal, and pain in sensitive regions). It put a smile on my face.

Instead of having clumps of hair falling out all over the place, I decided to take some decisive action, and have Linda shave my head for me – that will only leave stubble to fall out in the coming days.

Linda starts shaving Jake's head

Linda starts shaving Jake's head

In the above image, and the subsequent ones, you may notice a dark mark under my right eye. That’s apparently a burst capillary from a coughing fit I had a few nights back. It is not the result of anyone beating me.

The first step in the head shave was to achieve equilibrium, in the form of a mohawk, as pictured below:

The interim phase of the head shave - a mohawk

The interim phase of the head shave - a mohawk

After that it was a matter of simply shaving off everything that was guaranteed to be falling out anyhow, including my mustache and beard – facial features my kids have never seen me without. Krystyana was cool with that (all these photos are hers), but Bas was a little creeped out.

The final result is below, taken while I was in bed getting yet another blood transfusion (after getting platelets this morning).

Jake with a baldish head while getting his latest blood transfusion

Jake with a baldish head while getting his latest blood transfusion

A couple of things I have discovered with my new-nearly bald head: First, my head gets cold quickly. Linda got me a skull cap a few weeks ago, and that is helping. I also bought myself a monkey head cap (like little kids might wear in winter) at a state fair several weeks ago for when I need to amuse myself. I also have a baseball hat, and a good friend is knitting me another cap.

Second, I now find myself baffled by whether I should use shampoo or soap on my head. I stuck with shampoo this morning only because it was the comfortable, safe option (plus it’s Baby Shampoo, so no tears). But if any of you who are bald or have gone through chemo have input, it would be appreciated.

My understanding is that over the coming few days all my stubble will be falling out. One friend suggested (coming from her friend who had undergone chemo herself) that one of those lint remover rollers that uses light adhesive tape might be a good way to assist the process. Linda and Krystyana are out exploring, so hopefully they will bring one back so we can experiment.

Other than the hair loss excitement today, it’s a pretty routine day: Platelets, blood transfusions, lots of drugs, rest, and struggling with dry mouth. One interesting (although obvious) note: if you get a nose bleed when your platelet counts are down (I was at 13000 today) the bleeding doesn’t stop very easily. I’ve been told my blood counts should start showing a slow increase in a few days, and as with everything, it’s only a matter of time.

While I try to express my thanks privately, I want to give many public thanks to my awesome family caregivers – Linda, Bas, and Krystyana – and to the excellent nursing staff here at the clinic.

 

Day 4 Well a little more sleep   October 10th, 2011

From Linda…
Most of the day Jake rested between receiving more platelets and whole blood. We also learned that while whole blood must match your blood type exactly, platelets don’t have to at all. Jake’s whole blood was an O negative while the platelets were AB positive. Something new learned every day.

We walked Jake a few times and kept him company. The dry mouth is still his most frustrating side effect, but he keeps trying different things. He bravely tried a lemon ice (too strong), orange sherbet (too thick and gloopy), marinara sauce (too spicy) and hospital pizza (too doughy). He is still looking for just right but will settle for tolerable.

On another note, several people asked about isolation or not for neutropenia (zeroed out immune system)

We discussed this with one of Jake’s nurses a couple of days ago. And yes here at the research center someone has done a study on it. The difference between isolation and just good precautions was pretty much even when it came to infections.  The nurse actually said that Jake was more in danger from the microbes he came in with than anything we might bring in. A patient might have a fungal infection or a bad gut bacteria that their immune system had been holding at bay which could run rampant once the immune system is weakened. Although in Jake’s case, we would know that by now. And part of the precautions is a litany of preventative medicines like antibiotics and anti fungals. Plus if his temperature starts to rise they do immediate cultures on his blood, this has happened a number times but it has never been an infection, knock on wood. 

For us the invasive visitors, we have mandatory antibacterial cleansing of hands at his door. We don’t share cups, utensils, or food. No kisses except in the air and from a distance. If we get the least bit snuffy or whatever, we can’t visit and we even have to report ourselves to the clinic to be checked. Jake walks around the hospital with a face mask on to protect him from errant germs. Since we walk outside, we take off our shoes at the door. No plants, flowers, fresh fruits, etc. in the room. Only Jake gets to use his bathroom.

Of course, since the infection level is equal, there must be some benefit to the patient having family under foot. Human contact even if it is though a blanket means a lot. We are also a great distraction – talking, playing games, watching shows together. We are also extra help: getting warmed blankets, retrieving his special foods from the patient refrigerator, doing his laundry, taking him for walks, massage his feet, etc. But really the benefit to both sides is an emotional one, we get to feel like we are helping and Jake doesn’t feel alone either. Again studies have shown that patients do better if they have family and/or really good friends to help them through these things.

 

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Day 3 – Slow Recovery   October 9th, 2011

After Linda and the kids left last night, my plans for a restful night kind of came to a close with the introduction of a high fever and chills. The fever lasted most of the night and finally broke this morning. I kept telling myself that fever was a sign of the on-going battle of TIL vs. evil cancer cells, so in a way it was a good thing. And my doctors later confirmed that probably was the cause too.

However, it should be noted that the TIL attack is something that goes on for weeks, and it’s generally not clear until the second of post-treatment scans (which would be early December) of how well the treatment works. So feeling tumors from the outside to see if they have gotten smaller is something of a pointless exercise, at least this soon after the TIL was administered.

From the comments that Linda’s post received yesterday it might not have been clear that the 5kg of water weight I needed to drop was to ensure proper organ function, as much of that weight was in my organs (such as my lungs), and not any sort of vanity. I’m close to half-way there, and my lung capacity seems to reflect that.

The other side-effect of treatment that has been increasingly frustrating is that I have “dry mouth“, meaning that my salivary glands simply don’t turn on. So, to eat most things that don’t have a thin gravy of their own, I have to keep my mouth lubricated with water in between bites, and sometimes combine the two. That turns something like a protein bar into mushy cereal – not a great texture sensation.

A related symptom of this whole dry mouth situation is that my ability to taste has gotten terribly screwed up. Certain foods have no flavor (like Chef Boyardee single-pack macaroni and cheese – though Linda says it doesn’t have much flavor to start with), foods that should have quite a bit of flavor (Chef Boyardee single-pack Beef-a-Roni) are bland, while for other foods, even a few flakes of black pepper can make the dish inedible. I can taste sweetness to some extent though, so I’m thinking once I’m back in Boston I may have to work my way through Ben & Jerry’s collection if it looks like ice cream is edible to me.

I also learned that the carbonation from carbonated beverages is actually painful to my mouth.

I have some various dry mouth rinses, gels, and sprays – all of which work, but only temporarily, and being a mouth breather, things get dried out pretty quickly.

Hopefully my salivary system and tongue will heal up soon enough (it could be months) and I can start enjoying food again as opposed to having it be a torturous necessity for survival.

Perhaps I should be glad that this is the only side-effect from treatment that has clearly manifested itself, as I’ve had virtually no nausea (although in part that could be contributed to by the thrice daily infusions I get of Zofran), and while my energy levels are low (lots of naps), I don’t seem to actually be suffering from extreme fatigue (again, knock on wood). This may still change, but I’m hoping it doesn’t.

Today has been mostly spent connected to my IV drip system, first getting potassium phosphate to replenish my electrolytes (a four hour drip), then followed by two units of blood (two hours each – just finishing my second unit now) to boost my hemocrit and hemoglobin counts. I may also get more platelets tomorrow.

The family was with me most of the day, and during the points I wasn’t napping we took advantage of the rather decent WiFi connection here to watch a couple of streaming TV shows from Amazon (and yes, I have an Amazon Fire on order :-) ).

They (the nurses here) expect I will be under their care for another ten days or so, so my immune system can get built up enough that I can safely (with face mask on) travel back to Boston for a couple of weeks before coming back down for my first post-treatment scans in early November.

One ambling day at a time…

 

Day 2 Slow and uneventful…yeah!   October 8th, 2011

From Linda…

The night went well with sleep only interrupted for medications and vitals about 3 or 4 times. They continued to give Jake the medications to counter the IL2 effects for 24 hours after the last dose. Jake decided he was up for the morning with his 6am meds and sent me back to the Lodge to collect some more winks with the kids.

Jake had follow-up chest X-rays this morning which showed enough improvement in his lung congestion that they took him off the extra oxygen. Jake is happy not to be tethered once more. He is hoping he won’t have to sleep upright tonight. They also started him on meds to help him shed the 5+ kilos of water he gained due to the IL2.

Bas stayed with Jake during the afternoon while Krystyana and I ran errands including buying special foods that sounded interesting to Jake’s suffering taste buds and stomach. He is eating more although it is taking a lot of effort on his part.

Krystyana took Jake out for a walk in the halls under nurse’s orders. He needs to start moving more and lying down less to regain his strength and combat fatigue. 

Jake was feeling well enough that the sent me back to the Lodge for the night so he can go to sleep early himself tonight. Sweet dreams.

 

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Day 1 more IL2 and Stem Cells   October 7th, 2011

From Linda…

Jake had a rough night. I was thankfully he avoided the rigors after Il2 dose #2 and #3. He developed chills about 1.5 hours after each but a quick wrap-up with heated blankets sent him back to slumber land without more drugs.

While he was sleeping, I skipped out about 9am to grab a shower and breakfast at the Lodge. When I got back with the kids, Jake was awake but looking very weary and drawn. The nurses and doctors were concerned that his lungs were suffering from water retention which was causing labored breathing. They put him on oxygen, took some chest x-rays, and began a close watch on his vitals.

After a careful review, the doctors decided no more IL2 for Jake. Another dose would just worsen his symptoms and land him in the ICU. Although the protocol allows for up to 14 doses (no one makes it that far), the average is 4-6. The doctors were keen to reassure Jake that a strong response to the IL2 means happy active warrior cells, but success is NOT dependent on the number of doses. Those evils rigors on the first dose were a strong response.   The good news is Jake can now start his recovery process.

And even more exciting was the event of the day “Stem Cells”. As you know Jake had Total Body Irradiation (TBI) which wiped out his bone marrow. Today, Jake received back the stem cells collected from his own blood several weeks ago using apherisis. These will repopulate his bone marrow and get his body making blood cells again. This usually takes about 10 days to occur.

I’m spending another night on the fold out bed but we are both looking forward to a little more sleep.

 

Day 0 Draws to a close   October 6th, 2011

From Linda while Jake catches a cat nap…

Jake’s happy warrior TIL cells needed a feeding of IL2 to support them. At 3pm, Jake began his first dose of IL2. It is an infusion which takes about 15 minutes. They had warned us that side effects like fever, chills, nausea, and rigors, usually develop within one to two hours. Additional medications would be at hand to combat whatever developed. The worst of the side effects should subside between doses.

About 45 minutes after the infusion, Jake developed chills, nausea, and the rigors came on fast and furious. While his nurse got IV meds for the nausea and rigors, the kids and I went for the heated blankets and wrapped him up tight. I had been massaging Jake’s legs, but snuggling up close and holding him tight worked best. The kids and I held him close until the meds worked their magic and the rigors became an unpleasant memory.

Within another hour, Jake was cautiously sitting up and his fever had disappeared. The doctors told him later that generally a larger man’s muscle mass reacts more strongly to the IL2 but likely the reaction would lessen as the doses continued. They also increased another medication to hopefully lessen this as well on the next IL2 dose. He was feeling well enough to sit on the edge of his bed and watch a tv show with us before the kids headed back to the Lodge and bed.

So here I sit blogging in Jake’s room on a club chair that folds out to a single bed. I’ll be staying with Jake tonight as his IL2 dose #2 is scheduled for 11pm, followed by dose #3 at 7am. 

 

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Day 0 – The TIL Are In   October 6th, 2011

Starting just before 1pm today here in Bethesda, 69.3 billion TIL cells started their journey from the incubators and processors at the TIL lab here at the National Cancer Institute, and minutes later were becoming part of the body their forebears originated from five weeks ago.

I had a chance to meet some of the people in this fabulous TIL lab earlier today. I even got to meet and shake the hand of the woman who mothered my cells into splendid abundance. I thanked her and her colleagues profusely for helping me get a shot at a new beginning with their wondrous science and dedication – the TIL Lab folks rock!

The billions and billions of TIL cells are now circulating throughout my body, and in a half hour will be getting turbo charged with my first dose of IL-2.

That’s it for the moment. Need to focus on the what the nurse needs of me now :-)

 

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